I was diagnosed with a B12 deficiency 2 years ago after being misdiagnosed for years. (was put on anti depressants and told I was ill because I was depressed after saying that I was fed up because I had been I'll for 3 years). I collapsed several times, once at the docs but they just kept doing same old blood tests. Finally, after saying I thought I might have ms they tested me and my level was 96. By the time I saw the neurologist I had nerve damage, clonus, an enlarged pupil, pain in my legs and hands and extreme fatigue. My immune system was shot, I got shingles and a drooping eyelid that may have been Bells Palsy. I am have now been on monthly injections for nearly 2 years. I gradually started to feel better but the last few months have deteriorated. My levels have never been rechecked and crohns, pernicious anaemia and coeliacs have been ruled out. No reason ever found for my deficiency. Being tested again next week but what do I do if my levels are low as I suspect? Don't feel that docs know nearly enough about b12 deficiency.

Hi,
It sounds like you have been through an awful time. I get b12 injection every 3 months which normally takes about 2 weeks to work. I first had them back in may, when my b12 was reported as very low at 72. I had to have 6 injections, 2 weekly, which brought my levels up to about 400. I would suggest this to your doctor as it's likely that you have dropped low again. So you may need more than 1 a month to bring you back up. May be worth checking that your iron and folic acid is okay, because i know i was low on this too which made me real light headed sometimes and easy to faint. Hope you get the help you want, and just persist with them till you do.
Helen

Hi Helen. Thanks for replying. Forgot to say that I did get the loading dose before starting on monthly injections and I know I am lucky to get those as most people in this country only get them 3 monthly however low their levels are. It was only because the neurologist wrote to my GP saying I needed them every 4 weeks. My worry is that what else is there if regular injections don't work? Have they found the reason for your deficiency?

Yeah that is difficult, i'm not sure what other alternatives there could be, have you discussed with your doctor that they aren't working? i got told that my ileum in my small intestine is inflammed due to crohns and that is the part of your body apparently that absorbs your b12, which is why i need b12. Are your iron levels ok?

All my other bloods were ok apart from a vitamin D deficiency as well. Will go back to the GP and ask for more blood tests as haven't had any for 2 years. Have had colonoscopy and diagnosed with IBS and camera down throat revealing hiatus hernia but nothing that explains B12 deficiency

i find that i need to consistently replenish my b12 every few days with both forms methylcobalamin and adenosylcobalamin. cyanocobalamin sublinguals used everyday may also work well.

b12 is recycled at the ileum where crohns inflammation occurs, for some cases, this may make it very hard to keep levels high, thats why a constant replenishment is needed, perhaps as long as some inflammation still exists. that may explain why injections arent working for you.

1. Your vitamin B12 absolutely positively needs to be checked REGULARLY. For you to have that extreme of B12 deficiency and those kinds of symptoms and not be tested regularly is terrible. Get tested right away and make sure you receive proper supplementation based upon those levels.

2. I'd get reevaluated for pernicious anemia. The ball is often dropped when testing for it as often only one type of antibodies are tested for. However, there are three types of antibodies that can lead to pernicious anemia. Those which bind to the intrinsic factor-vitamin B12 complex preventing uptake, antibodies which bind to intrinsic factor itself preventing binding with vitamin B12, and antibodies to gastric parietal cells preventing the production of intrinsic factor. Make sure they test for all three.

3. Do you have ANY OTHER symptoms? Pain? Rashes? Sores? Bloating? Etc? Stuff you deal with regularly that you simply got used to having to deal with?

If B12 injections are not working or still low levels, include probiotics into your diet. Probiotics may help elevate your B12 levels. Also make sure your getting B12 in methyl form not cyanocobalamin form. Cyanocobalamin form your body must convert it into a coenzyme form for your body to get any benefits. With methylcobalamin its already in the active coenzyme form naturally found in your body, your body absorbs it better.

Thank you all so much for your advice. I did not realise that there are two kinds of injection for B 12 so not sure which I am having but will check. Had more blood tests today and should get the results by the end of the week.

Unbelievable! I rang the docs today to make an appt to discuss my test results. Receptionist said all your blood tests have come back normal so do you still need to see the doc. I said I did and could she tell me what my B12 level was. She went away for a few minutes and then said oh - we don't have that test result back yet and can't fit you in to see the doc until next week.
Why is getting any help so hard?